Saturday, January 18, 2014

The what ifs


What if every question could be answered with a "yes" or a "no?"

What if there was never any, "Well, to answer your question, we don't know."

What if there were no "percentages of chance," "odds" or "theories to suggest?"

I'm sure there's a place for all of that. But frankly, it's starting to get old.

In the past few years, I've found that - brace yourselves - medicine is not an exact science. Who knew, right? I was naive enough to think that if you had something wrong with you, you went to the doctor and he told you what to do to fix it. Then you went home and it got better.

Silly Girl. That couldn't be further from the truth. Especially when it comes to the big stuff. I don't know that I have yet to feel 100% sure about anything that has been done to my mom in the last few years.

Of course, much of that is ignorance on my part - and I realize that at some point you have to give it up to the doctors and trust that they are doing what they do to make things better. But at the end of the day, it still becomes the decision of the family and not the doctor. That's where things get a little iffy.

We are so incredibly lucky - we have my sister, who by default and choice of profession has become the go-to person for medical knowledge, expertise and relatively unbiased decision making for our family. She has been the one that, tirelessly and without being condescending to our ignorance, has explained and discussed mom's illnesses with the family so we can come to those ultimate decisions and my dad can sign on that hospital paper's dotted line saying, "OK, you may do this." I don't know how people who don't have someone like my sister do it. I know I leave the hospital every night as confused as when I got there, with more questions than answers, no matter how well she's dumbed things down for me.

Questions like, "Why are they waiting so long to do this procedure? Does that mean she's not in any immediate danger or do they just literally not have the time?" "Is she supposed to be feeling this way?" "Why is she sleeping all the time?" "How is she getting nutrition if there is nothing going in or out?" And the big questions, "Medically - why is this happening? and "What's the next step?"

All these questions come back with seemingly ambiguous answers, like:
"Well, odds are it's the cancer."
"But we don't know to what extent."
"We think this procedure will bring her relief."
"No, we don't know how long she'll be here."
"No, we don't know why she's sleeping all the time."

And the worst one, "Here are your options." Like you're choosing between the red cocktail dress or the black one.

Then we wait for the doctor who never comes. He says he'll be in "tonight." We wait. My father waits all day - in the chair - next to Mom's bed. For more than 12 hours he waits. I go home so he'll go home. My sister continues to wait. Late into the night, she leaves. No doctor.

Eventually he'll come, and eventually we'll have (some) answers. But it's never enough, and more answers beget more questions, but he's gone again. And she sits. And she sleeps. And she's sick. And we wait.

And we wonder - what's next? After the procedure, a decision will have to be made. Our choices are chemo or no chemo. A choice much easier said than done. To a medical person, maybe it's obvious - I don't know. To me, I wonder, "what if?"

What if she gets the chemo? Is that what she would want? What will be the side effects? Will she be able to go back to assisted living or will she have to return to the nursing home? How long will the chemo extend her life? And what will be her quality of life? And the biggest question - even though she has made incredible strides in her recovery from her brain aneurysm this past summer, does she remember and know ENOUGH to make that decision for herself? And if not, how in the world do we make that decision for her?

What if she doesn't get the chemo? Do we know how far and how fast the disease has progressed? What will her life be like without it? What is her long term prognosis? What will her quality of life be WITHOUT chemo? Will she be able to stay in assisted living? Are we talking hospice here? I'm not sure any of us are ready for that.

Ready for that. My dad hasn't been ready for any of this. None of us are. But especially him. And I know I talk about this man ad nauseum, but if you look up the word "commitment" in the dictionary, I'm pretty sure his picture is there. More than 12 hours a day by her side - only going home to sleep. Surviving on coffee and occasional hospital cafeteria food. Timing how long it takes from when my mom pushes the call light to the time the nurse actually arrives in the room. Keeping a notebook in his breast pocket of every single thing that occurs, from what she eats to when she goes to the bathroom to when she gets her medication to what she says. Kissing her on the lips every night and saying, "I love you, Honeybunny. Be good. I'll see you tomorrow."

Ready for that. I know she's in there. I see it in her eyes. She may still be recovering from brain surgery, but she's in there. I can see her. She knows. She gives me this look that tells me she knows. She opens her eyes and listens to what everyone tells her they're going to do to her and nods, "OK" and sucks it up. She manages humor when there should be none. She asks for gin to wash down her meds, and laughs that I got lost again in the hospital's maze of corridors. She makes US laugh so we don't cry.

The what ifs. I look at this woman and this man and wonder what if. What if they had never had to visit this place in life. What if none of this had ever happened. What if she does chemo. What if she doesn't. What if it's long and drawn out. What if it's quick. What if she leaves us. What if she stays.

What if she's gone.

6 comments:

  1. Wow. This is an amazing post. Thanks for writing about your struggle. I hope that you are finding moments of peace.

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  2. Amy,
    My prayers are with you and your family. Sadly, there are no easy answers. I pray that God will lay his hand on your hearts and give you peace and comfort as he guides you through this maze of questions.

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  3. So sad for what I know you are all going through. Prayers are with you, Amy.

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  4. I stumbled across your blog this morning after a google search for "Wild Bill Hickok". Ninety minutes later, I am still reading and am almost certain that is a record for me. Usually, I tend to more "surfing" than reading but somehow, your blog sucked me in and wouldn't let go. I could relate to so many of your posts in so many different ways. Thanks for sharing; you are a uniquely talented and strong woman. Don't forget to stop and smell the roses every chance you get..... Anthony in Tennessee

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    Replies
    1. Thank you, Anthony, for the highest of compliments.

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